The Great Cancer Recovery part 5

[Topofthecliffs]

Amazingly we have now filled four threads and are ready to start again. How time flies when you are being purposeful! Come and join in.

You may have finished active treatment for cancer, be in remission or NED. You want to look forward not dwell on the past. You know you ought to be eating well, exercising more and picking up the threads of your old life. Join us and share the ups and downs of recovery. We understand!
Here are some resources we found helpful:
The Mountain Lion
https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis
Peter Harvey on Psychology of recovery:
https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Resources from Penny Brohn:
https://pennybrohn.org.uk/our-approach/resources/
Breast Cancer Now Moving Forward:
https://breastcancernow.org/information-support/support-you/moving-forward
Get your Oomph Back with Carolyn Garritt
http://www.oomph.london/home.html
Charity providing treats for cancer patients:
https://somethingtolookforwardto.org.uk/
Exercise is good for you:
^https://www.webmd.com/cancer/features/exercise-cancer-patients^
Any more suggestions? Post them below

(There is a thread for those suspected to have cancer, or newly diagnosed and facing treatment, and also a thread for those with Stage IV cancer who want to talk to others in the same boat, and you are welcome on any or all of these)

Thanks for these links. The Cancer Pal mountain lion analogy is great. I'm part way through treatment for leukaemia and it seems to be going OK but I'm already thinking, even if I beat it this time, surely it will come back? If my blood cells have mutated once, surely they'll keep doing it?

I think I'll need to find a way to live with cancer, or the thought of it, while making the most of life.

Thanks for the new thread @Topofthecliffs and welcome @PatsFishTank to this very supportive thread. Good luck with your treatment- take it one step at a time, and celebrate small wins.

Thanks for new thread @Topofthecliffs and welcome @PatsFishTank and lovely to see you here @thesandwich

@PatsFishTank I don’t post on here very often but I’m in remission from leukaemia having been through chemo, immunotherapy and recently a bone marrow transplant I fully understand the what if it comes back etc,
I’m trying to rebuild my new life whilst knowing that I can’t stop it coming back if it does, again because of my stupid mutation. Hope you’re treatment is going well

@PatsFishTank Oh yes, the need to be vigilant post treatment whilst not letting the worry dominate. That’s not easy to pull off, works better some days than others. You don’t trust your blood cells not to do
the dirty on you again, I now look at my breasts with distrust.

Time passing helps, and I think acknowledging and accepting that certainty is not an option, cancer diagnosis and treatment is life changing, and that life post cancer is not quite the same. But, big but, some bits can be better. As people have said in previous thread, appreciating the mundane, and for me for one, thinking nope, I’m putting that down, not doing that no more, it doesn’t serve ME

DH and I did about 2.5 hours in the garden then 1/2 an hour doing the floors in the house and some more of the hedgehog and squirrel path is done. Its very muddy in the garden at the moment as DS walks so much in there and climbs trees that our lawn has gone in this part. I'm also only part way through cleaning the ones on the photos of soil. Will probably be another two gardening sessions before this path is finished then we have the old path to redo. I enjoy it though and keeping us fit.

Hope everyone is having a good weekend.

Welcome @PatsFishTank to our lovely thread. I gain so much from my wise online friends here. You are still in the very raw stage of treatment and it really does get easier as time passes. Have you had any psychological support from your hospital team or the cancer support services there? It does help a lot to process the life-changing diagnosis and the consequences of that. Be gentle on yourself.
Well done @MrsSqPenguins on the latest stones laid. They do look lovely! Does DS help at all with the garden? Or just tread on it? 😂

I managed my 68 mile bike ride today. It only rained hard for about an hour at midday and I popped on my very good waterproof layers and stayed warm and dry. DH and I were very pleased two of our good friends turned up to ride so we went round with them and chatted happily which made it much easier. I had a bit of muscular pain round my bad knee but generally it was much easier than the New Year ride in Scotland. Now I am home and warm and clean feeling quite pleased with myself. I am no slower than I was ten years ago which is amazing!
Tomorrow I shall have an easy day, meeting my DS and DD and DGS for coffee then going to a friend’s 85th party.

Nice to see you @hennipenni glad you are rebuilding your life! It’s good to look at it and work out what doesn’t serve you any more.
I do think that while we focus on whether our cancer will return, in the big scheme of things there are so many possible bad events that might happen that there is no point worrying about them all! I didn’t get hit by a car today, our hired van didn’t get into any scrapes, and I didn’t have a heart attack going up an enormous hill that made me cry. I am truly grateful for that, and for being fit enough to ride for seven hours. I’m not at all sure why I volunteer for these events. I think maybe it’s because it makes DH happy.

Well done on the bike ride @Topofthecliffs that's impressive and enjoy your well deserved easy day tomorrow.

DS does do things in the garden but it's what he wants to do rather than could give him a task. It's quite random. He cuts back ivy growing around the shed, he cleared the shed roof and gutter, he sweeps the floor inside the shed, he gets cobwebs off the shed, when a solar dandelion broke he mended it. He mainly walks round the garden which has turned the lawn in parts to mud, new game of sliding in the mud, puts ladders against trees and climbs them to taking rugs and sheets to put up them and sit on and he iPads up trees. It's a shame he doesn't do stepping stones as he's stronger than DH and I. He also seems to do like ninja warrior out there climbing up the chicken shelters, up the shed, over the fences. He gets muddy hand and footprints over quite a few places.

Thanks @hennipenni I had a bone marrow biopsy last week and I'm just waiting to hear what comes next - probably either more chemo or a transplant.

Thanks for your welcome @Topofthecliffs I haven't had counselling although I've been offered it, I haven't felt the need. I'm part of a research programme for people with Acute Myeloid Leukaemia which includes a mental health component and it's helped me reflect.

I'm very impressed by your bike ride. I went for a ride yesterday for the first time since my diagnosis and only managed about 7 miles but it was great to be back on my bike. I managed a long uphill drag (with a couple of breaks) after weeks of breathlessness.

Hope the next stage of treatment goes as well as it can @PatsFishTank and well done on your bike ride. Its very hard to keep exercise up in treatment and 7 miles is impressive. I find it best not to think about reoccurrence and to live life as well as you can now once treatment is over - I have always been a long term planner so that was a bit of a challenge but now I tend to plan shorter periods and do more things last minute. I do think if the cancer comes back in x years what would you regret not having done and try to incorporate as many of those things now and I have got through several already.

I have the Orchid Festival at Kew this Saturday - that is lovely if anyone is close by though best to pre book. We are members and its free but the weekends get booked up early. I have been for several years now. Its nice to get to February, starting to feel more optimistic.

@PatsFishTank 7 miles cycling is brilliant during treatment. I borrowed an ebike during chemotherapy and rode 3 miles to the hospital for chemo. DH would come and pick me up afterwards with the van and drive us home. It made me feel I still had a small locus of control. Afterwards it took will power to get back on my road bike but it only took about six months to regain my fitness for club rides. I had to do it all again after the second cancer but am now as fit as I have ever been. I recommend frequent short rides to build up your fitness and don’t push too hard. It’s meant to be fun!

@MrsSqPenguins I totally agree with your policy. Unfortunately it is rather expensive because when I ask myself “would I regret it if I don’t buy a carbon fibre spinnaker pole now and my cancer comes back and stops me sailing?” the answer costs quite a lot of money 😂 but my boat is very well appointed as a result!
Sounds like your DS would be great at Parcour. Just let him loose on a French town centre!
I have been out on my bike today and ridden up some hills so am now taking it easy. There are fuchsias to hack back and some roses to prune and feed and one to plant. It’s quite warm here and not raining which is a win!

Thank you for the new thread and welcome @PatsFishTank

I’ve had a couple of minor setbacks. I need to go back on zoladex for ovarian suppression as it turns out I’m still not naturally menopausal in spite of being 53 and the ravages of chemo. And I have had a mystery red mark on my leg for several weeks now. Finally got the gp to look at it in real life (phone calls not much help in this context!) We think it might be venous eczema which can be a symptom of a chronic condition common in inactive people 20 years older than me. Seeing how it develops and might need a vascular referral. And my lymphoedema has flared up after some vigorous gardening. Only fairly minor things but a bit wearisome. However: onwards! Had a good run at the weekend, edging towards 5k and have swum nearly 1000 lengths so far this year.

Well done with the swimming @dotty2 What happens when your lymphoedema flares? I sometimes wonder if that is why I get arm pain after a long bike ride but there isn’t any more swelling than usual that side.

I think I may have saved somebody’s life yesterday! I was in London at a conference and chatting to a random stranger over the lunchtime buffet. He suddenly choked and went purple. I asked him if he was choking and he nodded wildly. I went round behind him and gave him a couple of huge thumps which did nothing, then I did the Heimlich manoeuvre as violently as I could, and a bit of food flew out of his mouth.He staggered off into the gents retching. I sent a waiter after him with a glass of water and he emerged later grateful.
The odd thing was that in a roomful of people nobody except the waiter paid any attention! They looked away and carried on eating and chatting.
We took our seats again for the afternoon session and he passed me his business card. I think I may have saved a millionaire!
I felt quite peculiar on the train home. That sort of thing doesn’t happen to me. It was all so matter of fact and undramatic and he was quite lucky that I knew what to do and got on with it!
Now home and contemplating blitzing my SILs house while she is away on a cruise so it will be lovely when she comes home. How us superheroes spend our weekends 😂

You truly are a super hero @Topofthecliffs How amazing. Sadly most people do ignore emergencies like that as they assume someone else will deal of that the person is drunk and come over all British and embarrassed. I once read a magazine article about someone who nearly choked to death and was saved by a waiter and she said it was surreal to know she might be about to die while all around her people carried on with their dinner!

re my lymphoedema. The swelling becomes more obvious and my compression feels tight. It feels uncomfortable maybe not exactly painful. I saw my manual lymphatic drainage therapist and it’s much better. Haven’t needed to go for nearly a year. I get lots of other arm pain but lymphoedema itself doesn’t typically cause pain but obviously extra pressure can exacerbate nerve or muscle pain (that’s what my surgeon told me).

Just snatched a dry hour to do a little gardening and now bracing myself to talk to my travel insurance company about my leg 😓

Wow @Topofthecliffs you are a superhero( but we’ve all known that a while😜) I think I remember reading a psychology theory about size of groups affecting how people behave- in smaller groups, people feel more inclined to act because they feel more responsible? In larger groups people tend to think someone else will step in….
Well done.
Enjoy the orchids, @MrsSqPenguins it sounds lovely. Been to see some snowdrops in one of my favourite gardens yesterday in the rain- stunning, giving hope.
welcome @PatsFishTank and @dotty2 your swimming is impressive. Interesting about lymphodema- I get aches/ swollen boob if I neglect massage/ exercise. I see lovely nurses at our hospice for light therapy, and now have another v attractive compression boob tube for sleeping in which leaves a fascinating corrugated pattern.

Thanks @thesandwich and love those snowdrops.

Well done @Topofthecliffs on being a superhero. Well done on the bike ride. The well I better do it now policy and spending made me smile as I had just been adding up spending. Though my spending is largely on the house and garden but the days you could do that and assume you could at least get your money back and hopefully double it are gone. It makes the house and garden nicer though and DS improves and its good exercise for me so I will keep on. It must be lovely to have a boat.

Well done on the swimming @Dotty2 - sorry about all the medical things.

Lovely day today at the Kew Orchid Festival, got parking space just outside, had a latte in the orangerie, went to orchid festival, then a walk around Kew then had lunch in the orangerie overlooking the gardens. Now back home having a cup of tea. Attached some pics. Also planning a holiday with DH but not sure where yet.

Hope everyone is having a good weekend. Hopefully gardening tomorrow with DH.

Hope everyone had a good weekend. We did 4 hours gardening and cleaning downstairs floors yesterday and was nice to get out in the garden with the silkies. DS is using the garden a lot which is great but does create projects for us to do but its all good exercise. We got the 3 extra solar dandelions out, cleaned the shed, cleared some old pots, cleaned the chickens house, cleared leaves and laid more of the hedgehog path then cleaned all the downstairs floors as DS brings mud in. He's had 3 baths in the past 2 days.

That does sound a bit like the labours of Sisyphus @MrsSqPenguins as your DS creates more muddy mayhem as fast as you clear it!
I did a hilly ride yesterday and invited my ladies cycling group here for coffee today as we were washed out this morning. It is all getting a bit depressing as it goes on raining every day.
The spending thing is interesting. When I spend on my boat I don't expect to get it back but it makes her lovely to use. On the house you are right there is usually a return. My DB however has inherited a bungalow and the money they are proposing to spend on it is far more than the resale value of the house. Why not just sell it and buy one that is how he wants it? I guess it depends whether it has sentimental value or is in a unique position with lovely views/facilities nearby.
He can stay there for the rest of his life I suppose, with the house just how he wants it.

@thesandwich Snowdrops are such symbols of hope, courage, new beginnings. I’m enjoying my garden patch, and looking forward to a visit to a favourite Cotswolds garden next week.

One, possibly slightly left field thing, that I’ve found useful latterly is ChatGPT. Explored anxiety round scan, recurrence, trajectory of recovery etc. It allows me to explore my feelings at length, aka to rabbit on, acknowledging emotions, reassuringly pragmatic.

Gorgeous walk today, through woodland and across farm, primroses ready to flower, lots of bird song, included skylarks in grass land

We have flooding here (roads closed etc but we are well away from the river) but there was actually some blue sky for a few hours. Such a relief The endless rain is depressing me too. I snatched a little while in the garden at lunchtime. I love snow drops too and have been trying to get them to naturalise in the garden for ages. We have a decent showing now but would love to see some en masse. Weather looks good here Saturday so maybe then? I agree about a symbol of hope. We went on a snowdrop walk the day my DM died (anniversary today actually. She died early on a Saturday and there was an odd hiatus with nothing to do), she loved them too and they always make me think of her.

In recovery news, I’ve signed up for the body coach app and done two workouts so far. I feel the need for a bit of variety in my exercise. So far, so good.

Hello all, just checking in. Lovely to see flowers & cute stepping stones going down in gardens.

Work is kinda getting me down. I’ve been back full time post treatment since September but I’ve found myself not giving a monkeys recently. Still doing my job properly so I won’t get sacked, but I’ve definitely got less ooomph than I had. Was always rather chipper and vigilant - @MrsSqPenguins you wouldn’t have wanted me as your CO pre cancer, but now I just don’t care about all the “work stuff”. I still believe in what I do, it’s definitely a vocation, but I think I’m “quietly quitting”. Maybe I need a change of careers - maybe something adjacent?

I had a CT scan after the anti hormone strategy cause pain in my hips. Oncologist called today to say it was all clear. Which obviously is a relief. I was WFH and in a meeting (actually one I was interested in for a change!). I seem to have been handed onto a post treatment oncologist who is much less scary than my previous one who was like “brain the size of a planet” clever and a bit intimidating!

That's great you got the all clear @Littlecaf I could do with you getting a job in my area, we have to apply for listed buildings consent to get another bedroom and moving the modern stairs. We have the space but its just in an open corridor and not an efficient use of space. Its been on my to do list for several years now and I just joined the listed property owners club today as we will need all the help we can get. There are so many forms and drawings needed and it looks like its planning, lbc and building regs. I start it then get stuck and lose the will but we do need to try and get it sorted. Nothing structural at least and nothing original being changed but suspect it will take a year or so of back and forth.

We are supposed to be having a leather sofa bed arriving and so today have been clearing things out to make space - only the sofa bed does not appear to be where it is supposed to be, and the items I am getting rid of DH now has told me there is 1 more thing when its too late to add anything. Was also going to get rid of the shed rug and replace it for DS but DS must have heard and has hidden the shed rug. Hopefully doing more gardening on Saturday and have valentines cakes coming for DS - I got them last year and he kept the message for months. Hoping to get second path done this weekend though DS is still bringing in lots of mud and can't get new turf laid until end March. I have admitted defeat and contacted our old cleaner who did not want this amazing opportunity but have found another cleaner who will come on Tuesday.

Am getting my passport changed as it got wet on my remote island and its got through everything fine since but would feel safer with updated one. Looking at possible holidays but will wait until back. It was quite satisfying after having had chemo to have a photo with the same hair as before.

Snowdrops would be lovely @dotty2 We have a few in our garden and some other bulbs out and lots of others close and its nice to see.

Glad you had a nice time @GrannyGoggles

Well done on cycling @Topofthecliffs

@GrannyGoggles I have been testing ChatGPT and it writes a great letter to our neighbours about their falling down garage that is threatening our garden. I might actually use it! I like that it offers to make it more or less menacing!

I am feeling out of sorts. I keep getting weeks of feeling very tired and weak and sick, but just as I think I should address it I feel better. Somebody today suggested vitamin D deficiency which wouldn’t be a surprise given the shocking weather. Also I have lost a bit of resilience and can’t cope with too many things going on at once. I was playing skittles, keeping score and being team captain, and the club bar card reader broke down. I was overwhelmed by the end of the evening. That is just not me! Plus people keep telling me I look tired. It’s very unnerving! I am going to check my multivitamins have D and B in them just in case. Perhaps I am just getting older and this is how it affects me. I do think all that chemotherapy has done me long term damage.
We have a quiet weekend planned. Saturday there may be sunshine!

A quiet weekend should be good @Topofthecliffs especially if you are tired, will give you chance to rest. Sorry you are tired and feeling unwell, there can be a lot of viruses this time of year and the weather and darkness never helps anything. I tend to only be outside at the weekends and often on Thursdays I feel meh and I think its the gap but longer days and better weather are coming.

We also have sun predicted for Saturday and a whole 6C, we will likely be out in the garden as want to get paths done then prepare ground for turf which hopefully can go down mid March to start April.

The sofa bed has been tracked down and is at the delivery warehouse - not sure when will be delivered but think it will be within next 10 days. Cat woke me at 5.30am to 6.30am with his big white fluffy paw - he was spoilt yesterday as it was his 4th birthday (got him at 13 weeks old in my chemo) and he has decided he would like the same everyday. Then at 7.15am DD starts messaging me until 9am which was lovely but somewhat tired now.